‘Miracles do happen!’ Rare case of normal pressure hydrocephalus successfully treated
In 2011, Richard “Dick” Nash, then 66, experienced a troubling symptom during a two-mile walk for juvenile diabetes: he collapsed. This event marked the beginning of a years-long journey to uncover the cause of his declining health, a journey that ultimately revealed a misdiagnosis and a path to recovery.
A Misleading Diagnosis
Following the walk, Dick’s condition worsened. He experienced leg stiffness, balance issues, slowed movements, and cognitive difficulties. In 2016, a neurologist diagnosed him with Parkinson’s disease, a progressive disorder with no known cure. Despite beginning physical therapy and medication, Dick found his symptoms inconsistent and unresponsive to treatment.
Determined to find answers, Dick, leveraging his decade of experience as an insurance agent, navigated the complex medical system, consulting numerous physicians and specialists. His search eventually led him to UT Southwestern’s Peter O’Donnell Jr. Brain Institute, where doctors identified the true source of his problems: normal pressure hydrocephalus (NPH).
Understanding Normal Pressure Hydrocephalus
Normal pressure hydrocephalus is a rare condition characterized by an excess buildup of cerebrospinal fluid (CSF) in the brain. While a healthy brain constantly creates, cycles, and reabsorbs CSF, disruptions to this process can lead to fluid accumulation, compressing the brain and impairing its function. This can manifest as difficulties with mobility, cognition, and urinary incontinence.
Unlike typical hydrocephalus, NPH doesn’t usually present with increased pressure within the brain, making it harder to detect. Studies suggest that between 1.5% and 3% of people aged 70-77, and over 6% of those 80 and older, are affected – potentially impacting 1 to 2 million Americans. However, only 20-40% of those affected receive a diagnosis and treatment.
Types of NPH
NPH is categorized as either idiopathic, where the cause is unknown and often linked to aging, or secondary, resulting from another medical condition such as head injury, surgery complications, subarachnoid hemorrhage, brain tumors, brain infections, or brain inflammation.
The condition gained public attention in May 2025 when musician Billy Joel revealed his own diagnosis and began treatment.
The Path to Correct Diagnosis and Treatment
After years of managing what was believed to be Parkinson’s, Dick’s condition continued to deteriorate. He became largely homebound, requiring a wheelchair for outings, and experienced significant cognitive decline. This took a toll on his wife of over 55 years, Sharon Nash, who noted his loss of motivation and declining physical condition.
A breakthrough came during a routine physical therapy session at UT Southwestern, focused on addressing his incontinence. Pelvic floor specialist Michelle Bradley, PT, DPT, WCS, initially believed Dick’s diagnosis was correct. However, a sudden worsening of his condition after a procedure requiring valium raised concerns. Recognizing that valium shouldn’t cause such a rapid decline, she advocated for a neurology consultation.
Neurologist Vibhash Sharma, M.D., ruled out Parkinson’s disease after a thorough evaluation. Dick hadn’t developed other conditions typically associated with Parkinson’s, and his symptoms didn’t respond to levodopa, a standard medication for the disease. A previous DaT scan also provided limited evidence of Parkinson’s.
Dr. Sharma referred Dick to the NPH team at UT Southwestern, comprised of Padraig O’Suilleabhain, M.D., and Jeffrey Schaffert, Ph.D. Their evaluation, including observations of his “magnetic gait” – a tendency for his feet to stick to the ground – and analysis of previous tests, strongly suggested NPH.
Confirming the Diagnosis and Finding Relief
Further testing, including an MRI scan, revealed enlarged ventricles in Dick’s brain, indicative of CSF buildup. While previous lumbar spinal taps had yielded inconclusive results, a lumbar infusion test performed at William P. Clements Jr. University Hospital provided definitive evidence of NPH. This test showed elevated intracranial pressure and impaired CSF flow.
In August 2024, Dick underwent surgery to install a ventriculoperitoneal shunt, a device designed to drain excess CSF from the brain to the abdomen. Despite the risks associated with surgery, Dick felt it was his last chance to regain his quality of life.
The results were almost immediate. Just one day after surgery, Dick walked 250 steps with a walker, a significant improvement after months of being wheelchair-bound. Over the following year, he regained much of his physical independence, cognitive function, and ability to engage in daily activities, including traveling with his wife.
Frequently Asked Questions
What are the primary symptoms of normal pressure hydrocephalus?
The primary symptoms of normal pressure hydrocephalus are difficulties with mobility (particularly stiffness when walking), cognition (sluggish thinking, confusion, and/or forgetfulness), and urinary incontinence.
How is normal pressure hydrocephalus diagnosed?
Diagnosis involves a combination of clinical evaluation, imaging scans (like MRI), and potentially CSF testing and lumbar drains. A lumbar infusion test, which measures CSF flow and pressure, can also be used.
What is the treatment for normal pressure hydrocephalus?
The primary treatment for NPH is the surgical installation of a ventriculoperitoneal shunt, which drains excess CSF from the brain to the abdomen.
What factors might lead someone to seek a second opinion if they suspect a misdiagnosis?